Posts: 5

Topic: Is there a "normal" course for this disease?

I am wondering if there is a normal course for this disease? I know that most of us start out with jaundice and itching when we are diagnosed. That is how they discovered my tumor. But what happens in the long run if the tumor can't be removed? Does the cancer usually spread? Does the tumor grow? Or is each person and case different? What eventually causes people to pass away? What helps people live longer? Why is there such a grim 5 year prognosis?

I started out in good health, and have been healthy and took care of myself all my life. So it was a shock to find out I have cancer. However, I think that starting off in good health and relatively young (45) is beneficial.

Re: Is there a "normal" course for this disease?

There is no known path and not really any great information. Sorry. Each person has his own path for the most part. And as a doctor told me that there really is no way to get good statistics with the disease because there are so few of us and it would take EVERY doctor with a patient working together to get a good enough datapool to get any real analysis. Lets us not forget also that fortunately and unfortunately that people are just starting to take an interst and new things and treatments are here now that were not here 2 years ago. And what will be available in two years isnt what is available now. DONT look at the 5 year statistics as anything real. You are your own person and the statistics (given our small pool, the recent advancements in screening and treatments) mean NOTHING.

Ok, your other questions. Many people find alternative treatments to some benefit. I personally think laughter is a key as well as good sleep. The people to ask for how to live long with this are Jeff, PEter, and Kathleen (though I think it is her husband who comes to visit us.) They are the hope spreaders and between the three have almost 20 years experience between them. So THERE to that 5 year statistic!

What causes people to pass away varies also. Sometimes infection, sometimes the cancer itself, sometimes complications from treatment. What happens in the long run-different for different people. Some people are able to have stable disease and live a relatively normal life and treat cc as a chronic illness. Many are not so lucky and the disease spreads and becomes terminal. My doctor emphasised how much cc likes to spread. Well I know that if I was a cancer and attached to someone as wonderful as myself, I too would want to hang around and come back!

I too found it a shock to be diagnosed with cc. At 32 at diagnosis I didnt understand how a could get something so rare and generally found in older men. Sometimes it feels like there is some double life going on or that I am reading about this character in a book and it is actually me. But I try to not stress too much, though I usually fail. The problem with this cancer is there are no answers. No treatment protocol. No list of things to check off. If you go to 10 doctors, you will get at least 7 different suggestions. So it is always beneficial to get a couple of opinions.

I hope I have helped. The truth is no one really knows much about cc. I wish you the best.

Re: Is there a "normal" course for this disease?

Lisa, I don't think there is a "norm" when it comes to this cancer.I think there are obviously some types that are much more aggressive than others.What the types are is the difficult part to understand. It just seems that some people regardless of whether they have a resection or not are unable to fight the beast. Others that I personally know of including my husband were not able to have a resection and are doing just fine with their treatments or even with no treatment. The truth is that the more I read on here and elsewhere the more hope I have for my husband's long term survival. The statistics he was given were 6 months without treatment and 2 years with treatment. But I have observed ,unfortunately that there are many people that pass away within weeks or a 2-3 month period which to me means that there are some that must make it a lot longer for the statistics to even be 6 mos- 2 years. And those are old and not very reliable statistics anyway!I don't know if that makes sense or not but basically throw the statistics out the window because they really don't matter. One medical person told my husband that in his opinion some people are just better able to fight cancer and handle chemo etc., some just can't. As far as the main cause of death I think it is probably liver failure that is caused by infection or just breakdown of the liver from the tumors, chemo etc. I have always felt the most important thing is to do every thing you can to promote liver health. I give my husband supplements and foods that aren't just anti-cancer but are really good for the liver and help it regenerate from any damage that has occurred. He had a lot of radiation so it was important to repair the damaged cells but all drugs and chemo are hard on the liver so any thing you can do to keep from stressing it is good. Thank God for the internet and sites like this. We are all able to learn so much and support each other. It really is a blessing. Best wishes, Mary

Re: Is there a "normal" course for this disease?

Mu husband was diagnosed early this year Feb 07 with CC and a huge tumor on the liver, 15 cm not resectable. We did the tour of oncologists, even U of Wa and off to Houston to MD Anderson. Wow beware of the clinical trials ! After all was said and done, and research upon research, he only did a short stint on chemo. too much neuropathy and side effects. So he did althernative therapies, ate a high alkaline diet, and lasted the year, so far. (He was given 2 mo if he did not participate in chemo, which statistically doesnt do much be we were told "its all we have". During the year we travelled and packed alot in those months. Now he has deteriorated and at end stage. HIs tumor not only grew, but has buddies in there. Hospice has recently taken over his case. The end is going just how hospice has precicted, weight loss with no appetite, dry skin, yellow tinge, fatigue, some abdominal pain and acites (abdominal swelling) NOt alot of happy ending with this type of cancer, so I am glad we enjoyed the healthy time while we had it. Live like there is no tomorrow !! Which I have learned we should all do more of. I live alot more in the moment now, having learned so much from this process. Any info you need, we are all here. This site is the best one out there, very specific. You are not alone. Robyn

Re: Is there a "normal" course for this disease?

Lisa,You have asked a question many of us ponder. I agree with others here that there are no known answers. We are each different in so many ways, this will always be true.It's true that I, among a few others, have drawn a long straw. I am blessed and try to remember that each day but while I have worked hard at research and making choices that I hoped would work for me in the end I really do believe I am just one of the lucky ones.What do I think may help? Here's a few:

Surgery - The one piece of data we do have is that our prognosis is best for those of us lucky enough to have this option, and to find a surgeon who has CC experience and is willing to take a chance on us. I was one of the lucky ones.

Attitude - I have a strong desire to live. There is so much life in me.

Love - Loving and being loved. I have wonderful friends and family and the love I have received has been a gift of my cancer. It was always there of course.......but I never let myself see it so clearly.

Faith - This is different for each of us. Whatever we believe what for me matters most is that we live our belief, our faith. Jeff is a wonderful example of this. Mine is much less defined but strong within me.

Willingness to accept that death is part of life. - I'm a gardner and it's was in the garden that I was unable to avoid recognizing the circle of life and death. This is a hard one to talk about here with so many of us facing death in such real and intimate ways. I've been close enough to my own that I feel I can write about my experience, but it is only mine. I love life but while I fear pain and hospitalization I do not fear dying.

Process - I've chosen a path with this disease that seemed right for me for whatever reasons. You can read my posts for most of the details but it involves diet, alternative medicines not easily available, chinese medicine, chemo, some drugs to help liver health, and some practices (visualization, some meditation when I can focus, Qi Gong, Yoga, exercise)

The only thing I think is really relevant here is that this is what I choose and it seems to be working for me. Others make different choices that sometimes work and sometimes don't.In the end I have so far drawn a long straw. It may be that simple.

This site is the best source of information and hope of anywhere I know of on the planet. We are a special community united by never wanting to be here yet knowing we are understood and cared about when we get here.

The information expressed is not medical advice. The discussion boards are not intended to replace the services of a trained health professional or to be a substitute for the medical advice of physicians or other healthcare providers. Read the full disclaimer.